Last year, I had a j pouch repair at the Cleveland Clinic. I do not wish to mention the surgeon right now (although if you do some research on my other posts you can figure it out). It has taken me a long time to be able to write about what happened for multiple reasons. One, I was too angry, and two, I like the doctor as a person, and it's hard to write negative things about someone you like. However, after recently hearing another disheartening story involving the aforementioned doctor, I felt it was time to share my story.
After being diagnosed with j pouch prolapse by the esteemed Dr Shen, I went with his referral and consulted with a surgeon at the same facility. Wanting the most minimally invasive option possible, I specifically sought out laparoscopic surgery. I had a consult with another doctor in Texas who used robotics and was impressed by the technology and the idea of not being cut into again in such an invasive manner. During the initial consult, with my boyfriend as a witness, we were under no circumstances told my chance for laparoscopic was only 10%. We were sold a false bill of goods and told that it would either be laparoscopic with ileostomy or laparoscopic without ileostomy. There was NO other dialogue. In fact, it was reiterated over and over that these were the two options. In closing, I asked again to make sure I understood what would be happening.
The day of surgery, I awoke to extreme pain (in which they refused to make me comfortable, but that's another story for another time). Later, I could not understand why laparoscopic hurt so badly. Considering the Pain Management team would not administer the proper dose of pain meds, I was left in a considerable amount of pain. I finally asked the nurse why it hurt so much, and she nonchalantly said because I'd been cut into. Imagine my shock when I lifted my gown and saw the bandage. However, still confused, I remarked that it was a large bandage for laparoscopic. That's when she said, "Oh, no, you didn't have that done. You had a laparotomy." I was in shock.
I called my boyfriend immediately, who in turn expressed his shock because he had spoken to the doctor following my surgery, who did not tell him what they had done.
To make a long story short, because I was so sick from pain and struggling to make it through those five days of hell, I could not muster the energy to put my thoughts together enough to confront the doctor (who rarely made an appearance). I remained confused, scared, anxious, and worried. I did, however, bring it up to another doctor on my surgical team. I said, "Why was I not told I was going to be cut into?" His response? "Well, would you have done the surgery if we had?" I couldn't believe what I was hearing.
Months later, I still questioned whether I misheard the doctor during the initial consult. Because of this doctor, I canceled my meeting with the doctor in Texas, thinking I was getting laparoscopic. I didn't even do research on laparotomy because I was not told this was most likely the option. I searched and searched my mind, wondering if I simply didn't mishear what she had said. My boyfriend (who I pointed out was there), assured me that was not the case. I questioned myself, that is, until I looked through my medical records more thoroughly and discovered the anesthesiologist's report, which mirrored what I was told at the initial consult. It said laparoscopic! Nowhere was it written that I would be getting a laparotomy.
I feel duped, betrayed, violated. I would have put more weight into my decision if I would have known I'd be getting cut into again. Now I have a scar that is even lower than my original scar, a series of what feels like never ending blockages, and chronic pain. I am so angry that I was lied to like this. This was my decision to make, not theirs. Whether or not the lying was intentional, I do not know. I do, however, now know for sure that we were not told this during the consult.
I am sharing this story to warn others to get a second or third opinion. I don't know what I will do at this point. It has been hard for me to confront this surgeon because I liked them so much. But recently, a doctor friend told me a story about this surgeon, a similarly negative incident happening to his friend's daughter, who was getting worse under this doctor's care. That's when I decided I had to share.
I consider this a breach of trust, a violation of ethics, and I do not know what I should do or am supposed to do. I don't want to ruin my relationship with Dr Shen in any way should I need him for further testing. But I don't want others to get hurt either.
Thank you for reading, and I welcome your input. FWIW, I had my reversal at another hospital and obviously by another surgeon. The aftercare could not have been more different.
